Knowing ahead

“Knowing ahead” that a multiple will not or may not survive

With early ultrasound, frequent ultrasound and the kinds of prenatal testing which are now available, sadly many parents expecting twins or higher multiples learn that one of their babies (or sometimes two of triplets or higher) has a problem that will not or may not allow the baby to live after birth. The conditions which we most often hear of are anencephaly (lack of most upper brain development) and other neural tube conditions; Trisomy 13, Trisomy 18 and Trisomy 21; Hypoplastic Left Heart Syndrome and other congenital heart conditions; problems with lung, kidney or other development, or with the umbilical cord; and many conditions related to “identical” twinning. It is very possible for the babies to be monozygotic (“identical”) and only one of them be affected by one of these problems or conditions. In Dr. Keith et.al.’s Multiple pregnancy: Epidemiology, Gestation and Perinatal Outcome, the article “Congenital anomalies and pregnancy loss” (Meyers et.al.) is very relevant, as is “Selective termination of the malformed fetus” (Grisaru & Lipitz) in Iatrogenic Multiple Pregnancy by Drs. Blickstein and Keith, and the chapter in Multifetal Pregnancy by Newman & Luke “Genetic Diagnosis in Multiple Gestations”(see our Bibliography). Again, the fact that there are two or more babies and that multiples may have a higher incidence of some types of problems make adverse prenatal diagnosis an all-too-real possibility, and for many, a reality. Sometimes it is clear that the baby will not be able to live past birth, at the most, and in other cases it is not as clear what the specific problem is or what the baby’s quality of life might be if he or she survives birth.

For some parents, selective termination is not an option for medical reasons, or for philosophical ones. For others, it may be but they choose (in a situation they never would have chosen) to continue the pregnancy as it is because they believe that the benefits don’t outweigh the risks and they would prefer to experience the birth of their babies as the context for saying goodbye to the baby who will die. Everyone we have known who has opted to continue the pregnancy as it is has given birth to a surviving baby (or survivors of higher multiples) successfully, although some have been premature, in some cases after they were not monitored for the amniotic fluid build-up which can occur with the sick baby. One mom, who had lost twins to prematurity several years before, successfully battled premature labor and even the urging of her priest, in order to witness the birth and passing of her twin daughter with anencephaly.

With many thanks to Sandy Lee – one of our first members who experienced “knowing ahead” with her twin daughter Erin, who was born with her sister near term after 11 years infertility and a diagnosis of Trisomy 13 at 20 weeks – for her input on some of this, here are some thoughts for those who are now experiencing this. Special thanks to those who shared their stories in this section. We hope that being able to plan for the birth will be helpful in coping and healing over time and raising the surviving baby or babies while having a special place in your heart for the one who was not able to be here.